Not been on here for a while, went to see rheumy a couple of weeks ago, she did lung and foot x-ray…and yesterday went back to my neuro, who I haven’t seen for almost a year.
The neuro told me that my MRI and nerve conduction tests were ok…which I knew as my GP had told me. He now wants me to go to Plymouth Hosp. (not my local one) to have a skin, nerve and muscle biopsy, as he said that it ‘could’ be vasculitus.
I must admit that I’m not looking forward to that…
I was just wondering if anyone else who thought they had MS…has been told they may have this?
When I was awaiting diagnosis this was something suggested to me. There were other things too, lupus, I think and Lymes. But in the end I went for the grand finale. That was in 1995.
It was a complete mystery to my GP (not least to me!) what I actually had, but even though they gave me the all clear two or three times, I could feel it in myself that something was far wrong and persisted to get to the bottom of it.
I was a bit unlucky, in that I succeeded! I hope you don’t.
I have Lupus (SLE) as well as SPMS. I started getting a bad rash on my right leg and my rheumy said he’d like to do a biopsy, would I mind? He did it and the result came back as vasculitis. The biopsy didn’t hurt one little bit as they deaden the skin first, just have to look after the wound to make sure you don’t get an infection. Also with Lupus you get what’s called a Butterfly rash which is on your face and it is the shape of a butterfly flowing from one cheek over the nose to the other cheek. Top conteract this stay out of the sun and use actor 50+ everyday, winter and summer. Since being treated the vasculitis has subsided although I always wear support tights, only ones that go up to the knee though, and it has worked.
I wish you all the luck one can have.
I too was briefly suspected of having vasculitis on the way to diagnosis. That was on the basis of a single abnormal blood test.
There are many different kinds of vasculitis, so I think the suspect in my case was probably a different kind, as I was told it could only be conclusively diagnosed by a brain biopsy, which my neuro “wouldn’t put me through”. He probably wouldn’t have got a choice anyway, as I don’t think I would have consented! The other forms of biopsy weren’t mentioned.
Several weeks later, the dodgy blood test was repeated, but showed nothing unusual. I susbsequently learnt the test is extremely sensitive, and false positives due to contamination at the lab are not uncommon. I can only assume that must have been what happened, as all mention of it stopped, after the second test failed to validate the first, and I went on to be diagnosed with MS.
Thank you all for your comments…I will be back to let you know how I get on after I’ve had the biopsy.